Financial, emotional and physical pressures associated with caring for people take their toll in an increasingly needy society
March 12, 2008
By CHIP JACOBS
Not long ago, a woman waiting alongside her ailing husband at the hospital was reading a story about how people tending to a chronically ill relative can watch their own lives teeter. As the message sank in, so did an icy realization.
“I am one of the people that [the] article refers to,” the wife soon posted on a blog. “I am one of those people who slowly surrendered her social life, one engagement at a time, surrendered her hobbies, one frantically distracted minute at a time … to the care of my husband … I can’t begin to tell you how overwhelming and heavy that felt when it hit me.”
Across cyberspace about the same time, a middle-aged son exasperated with his frail yet headstrong 90-year-old father was grasping for advice from strangers. The son, who had health troubles himself, including nerve pain and depression, had been unable to persuade his dad to let him handle his folks’ bills. His mother, 85, couldn’t help. She had dementia.
“Right now I am so angry with everything …,” he emoted. “My heart has been racing all night and it is very hard for me to calm down.”
Sympathy bubbled for him. A 24-year-old disabled veteran from Oklahoma, whose father-in-law had just moved in with him, told the man his frustrations with handling aging parents would subside with time and experience. A woman struggling with an ex-alcoholic mom with circulation problems and a mean streak tried offering encouragement, too. Later she admitted she’d needed to vent about her own situation.
While the presidential candidates bicker over how to overhaul a health care system too expensive for millions and too balky for most, an emerging crisis with hooks in medicine, family culture, gerontology and economics is lurking in the shadows. Affecting a very large number of people, it may not sit there long, experts believe.
Americans are chafing under the yoke of a caregiving crisis never seen before in history. Today, an estimated 50 million people are furnishing some level of care for an ill, aging or disabled relative or friend, according to the National Family Caregivers Association (AARP pegged the number of people doing it an average of 21 hours per week in 2006 at as many as 38 million.)
Essentially, one out of every six Americans is tending to someone partly or fully incapacitated. About three-quarters of them are watching over their parents and grandparents.
If you figured the majority of caregivers are Generation X-ers easing parents into do-it-all assisted living, you’re thinking too generally. With average lifespans extending and some previously terminal diseases knocked into manageable conditions, 30-percent of family caregivers are seniors themselves, federal statistics show. That 30-percent figure is double the number of people 45 to 54 doing it currently.
As the despondent people above can attest, responsibilities and pressures associated with caretaking often imperil the health, finances and psyche of the well-intentioned people doing it.
Elderly spouses with their own chronic ailments, for example, register a 63 percent higher mortality rate from the stress of tending to a dependent mate than peers who don’t. Just assisting someone with dementia can roil the immune system of a family caregiver as long as three years later, making him or her vulnerable to an illness themselves, researchers have found. They’ve also learned that the most stressed family caregivers frequently don’t make it into old age. Many lose 10 years off their lives, according to one study.
My own kin learned this the hard way when my thrill-seeking uncle, Gordon Zahler, broke his neck in a gymnastics stunt gone awry at Marshall Junior High School in October 1940. While my mother’s brother outlived the prognosis that he’d succumb to complications from his mashed spinal cord, eventually returning from County General Hospital as a quadriplegic, the family’s well-being had no such miraculous rebound.
Seven years after Gordon’s spill, his showbiz-composer father had died from the anguish, leaving mother and son to subsist on welfare and handouts. It was only years later, when Gordon relocated to Hollywood to peddle music to early television and the movie studios, that they put squalor behind them.
Flourish as he would professionally, he still couldn’t dress or feed himself, go to the bathroom, or do much that someone with functioning limbs could. My grandmother, determined that her disabled son would outlive her, soldiered on as his caregiver and sometimes-business partner with nary a complaint about fatigue or swollen legs.
She was only able to “retire” when Gordon married. By then, all those years of servitude and forfeited “me-time” to tend him had exacted a toll. She’d gone one 14-year stretch at Gordon’s side without a vacation. In the mid-1960s, she contracted stomach cancer, a disease with little history in the family, and died.
A convalescent home wasn’t for her, and neither is it for many today. Seniors and the disabled aren’t flocking to new cities, nursing homes or retirement villages as they once did. Rather, growing numbers are trying to live semi-independently. The new caretaking generation has witnessed this shift, and rolled up its sleeves, sometimes graciously, but commonly burning the candle at both ends.
“The world is so different now,” said Suzanne Geffen Mintz, president and co-founder of the National Family Caregivers Association. “The technology is different now. The policies are so different now. The medicine is so different now. And the costs are so different now.”
The Caregivers Association says the typical modern caregiver is a married, working 46-year-old woman watching out for her widowed mother. The hang-up is that the definition of typical is hostage to a graying country.
Walk into a random home and there’s a good chance that one of the owners, at some juncture, will have a relative-in-need living in one of the rooms. Because hospital stays are so costly, there may be a ventilator or other medical equipment there, and a contracted nurse who drops by. Chat with enough people and you’ll find a businessman who quit his job to watch over a dad with Parkinson’s disease or cancer. A blog called “Senior World Chronicle” estimates that two out of three caregivers for Alzheimer’s patients are their adult children.
Still, there’s no cookie-cutter arrangement.
To most Alhambrans, for instance, Marijune Wissman is a conservative-tongued writer for The Citizen’s Voice, a Monterey Park-based community newspaper. At home, Wissman, 83, and her 85-year-old husband Bill, a retired LAPD lieutenant, tend Frankie, their 58-year-old son with Down syndrome. He has lived with them since birth.
Today, they have help and a routine. It hasn’t always been that way.
“It’s like having a 4-year-old for the rest of your life,” Wissman said. “We’ve had this little boy around a long time.”
She considers herself fortunate. A number of the mothers she knew through the special-needs day schools that Frankie once attended aren’t around now.
“A lot of (them) came down with heart problems and nervous system problems,” she added. “Many of them died before they got to the age of 70. It worried me.”
Besides erosion of health and the emotional demands of ignoring one’s own needs, there’s the hole it cuts into personal finances – and the US economy.
A federally backed study concluded that women, who represent 60 percent of the caregiving population, are two-and-a-half times more likely than non-caregivers to live below the poverty line. AARP calculated that in 2006, the value of unpaid caregiving – lost productivity the workforce might have absorbed – was $354 billion. That figure is roughly equal to total Medicare payouts or ExxonMobil Corp’s sales for that year.
And that may be the upside. By 2050, when the youngest baby boomers will be in their 90s, there may be twice the number of people requiring home-based assistance, USA Today has reported.
How much government can soften the crunch nobody is sure. AARP hopes the next administration and Congress will broach the issue. Renewing and expanding the Family and Medical Leave Act and providing a caregiver tax-credit are among some of the proposals. Though far from a central issue in the presidential race, there’s been some tangential discussion of the issue; Hillary Clinton put out a position paper on the subject.
In the meantime, the subject of burned-out, tug-and-pulled people looking after elderly parents and disabled kin living longer than in previous eras is penetrating popular culture. It’s salted in bestselling books (“The Almost Moon”), movies (“The Savages”), self-help guides, support groups and blogs. A cottage industry for uptight caregivers believes aromatherapy will do wonders.
Mintz, who once worked in interior architecture and marketing, never set out to make care-giving her calling. Then her husband contracted multiple sclerosis in 1974, and she soon recognized the load people tending to the ill and handicapped face. Thirty-four years later, a blog encouraging caregivers to recount their experiences percolates with riveting and often desperate stories. Mintz remembers the pathos of one caregiver.
“All she wanted was to be able to go to church twice a month,” Mintz said. “You ache when you hear that. Unless you’ve lived it you can’t understand.”
If the trend continues, understanding shouldn’t be a problem.
Chip Jacobs is a freelance writer and the author of “Wheeling the Deal: the Outrageous Legend of Gordon Zahler, Hollywood’s Flashiest Quadriplegic.” His Web site is www.chipjacobs.com.